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Pandemic Pen Pals
Pandemic Pen Pals allows children and their siblings (aged 5 and over) living with an Inherited Metabolic Disorder to stay connected.
RAREYouth
May 22, 2020
My life as an advocate
Since being diagnosed with X-Linked Hypophosphatemia (XLH), Sally has put rare advocacy front and center in her life, empowering others.
RAREYouth
May 22, 2020
How I turned my rare diagnosis into a free app to connect and empower others
13 year old Claire Barrow turned her diagnosis with the rare bone disease hypophosphatasia (HPP) into an APP with global reach.
RAREYouth
May 22, 2020
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